Caregivers - The unsung heroes

I first started working in the end-of-life field as an in-home caregiver, which is what motivated me to become a hospice nurse. As a caregiver, I realized that the elderly in general, but especially those who were declining quickly, were not receiving the care I felt they should, and I wanted to try and change that. I went back to school in my late 40's to be a hospice nurse specifically. I work full time as a hospice nurse, and in my spare time I am a death doula and an end-of-life educator, hoping to hand over my tools to anyone providing this care, especially caregivers.

The role of a caregiver is not defined by the letters that follow their name on a badge, some do not wear a badge. If you Google it, you will read something like; "a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person." I think a whole lot more should be added to that description, it is incredibly vague, and less than complementary to the work they actually do.

I find myself advocating for caregivers most of the time, not just the hired caregiver, but also the family member who has found themselves in a new role, while also navigating the impending decline, and death of someone they love. The family member/caregiver experiences a different level of burnout and distress, one that should also be addressed. They are not paid, oftentimes not even acknowledged, as their role is expected.

So many people move their mother or father or grandparents into their home to care for them as they age, which I think is incredible. It is not easy to do, especially if you do not have the space or the funds to do this. Some quit their job to provide the care, some do both. And as their loved one declines and the care need increases, they continue to provide it, causing them to fall apart, although never letting anyone know. They let me know because I am a safe place, and I see and hear about it often. They don't sleep, rarely eat, skip showers, and stop doing the things they used to love and found joy in. And this also interferes with their grief because the role between family member and caregiver is so blurry they cannot be both, so they end up only filling the caregiver role, missing out on those opportunities to have last moments and words with their loved one.

The role of caregiver is far more intimate and personal than most people know. You are doing things for another human being because they have lost their independence, which is difficult for them, and makes this work equally as difficult physically, emotionally, and oftentimes spiritually for the caregiver. The work itself is very hard on the body, and no matter how hard you try to lift and move appropriately, at the end of the day, your body aches, and constant pain becomes something you learn to live with.

Caregiver burnout is a very real thing, and the factors that can lead to burnout are most commonly the hours. You may have a specific shift, but it tends to become more than that, usually due to places being short staffed. In facilities especially, you are often being asked to work additional hours or days and this never ends. And if you work in the home, and a patient is needing care that the family cannot provide themselves, you feel obligated to stay as long as you are needed or offer to do more than you were originally hired for. You never just leave, certainly not when a patient needs you.

For caregivers of patients who are declining quickly and might be actively dying, the toll it takes on you personally and emotionally, weighs heavy. You cannot help but get attached if you are with the same person day after day. It is not just a "job" anymore, you actually feel like this person is family, and you care for them as though they are. Witnessing them decline, and taking on more hours with them because of it, while also watching the family navigate their own grief journey is something you can't shake. None of this is something you can close the door and walk away from, leaving it behind... you can’t help but take it with you when you walk out their door.

And when you have a patient that has no family, you find yourself even more drawn to stay longer and do more.

The work of a caregiver does not have a stop button. You do not stop feeling for them, or worrying about them, so even when you have left for the day, they are on your mind.

There are so many consequences when doing this work aside from just your physical health. It affects your outside relationships, such as family and friendships, and your other job(s) which most caregivers have at least two. When you are caring for someone else, that becomes your priority, so you might find yourself canceling plans, or being late to other obligations, to ensure your work is not left undone for your patient. You are isually too tired to find the energy or interest to do anything except sleep when you finally get home.

Caregivers need to practice self-care, which is usually the last item on their priority list. You must learn to set boundaries, and when to say "no." You must take time out for yourself, and know when you have had enough. You need to find someone to talk with about everything you are feeling, and that can be hard to find.

I remember during the height of COVID I was struggling with burnout and stress and asked to speak to someone. The response I received made me feel like they were more worried about me possibly taking time off, rather than how I was actually feeling. I did not feel like I had the support I needed to be able to share how hard it was for me. So, I stopped trying to talk about it. Caregivers need to have a safe and constant place they can go to for support, and they need to feel heard. If we do not receive that, it adds to our burnout, stress, and anxiety... it makes the problem worse.

If you work in a facility, or for a company, their priority is staffing; not how staffing is doing, but that there is enough. It does not feel like it matters that this is your third day of working or your twelfth, or how many hours you have been working. If they are short-staffed, they will ask you to work another shift back-to-back. Respite is not something caregivers are offered, and while the company will make sure you clock out for a required lunch break, if you work through it, they don't appear to care as long as you've clocked out. Overtime is frowned upon, and we are always being called out for that, but if they need us to fill a shift, they use overtime as an incentive.

Overall, I think most companies are having a really difficult time with staffing since COVID. Anyone who worked in this field during that time, knows burnout. I felt it and everyone I work with felt it, and yet we still got up day after day and did it again. It took its toll on me and I became ill. I gained weight, I was diagnosed with Type II diabetes, high blood pressure and my anxiety was off the charts. I had to change my life to feel healthy again, which meant diet of course, but also personal self-care, and setting boundaries.

At that time I was working 6-7 days a week and 8-15 hours a day.

Most caregivers are working more than one job, and many are sending money back home to help support their families in other countries, so they will take on whatever is offered them. They are working the day shift, the night shift, and the weekend shift, in addition to their regular full-time job. No human being should have to work that much, but the pay for this work and the cost of living does not balance, so we are all robbing Peter to pay Paul. The added hours might cause physical pain and emotional distress, but the added money is our motivator.

Regardless of how tired we might be, we are surprisingly strong. We get up every morning and we go to work, because most of us love it, and love what we do. And we rise above whatever we are feeling. On my very worst day, with my back aching, and no food in my stomach, no trip to a restroom, three patient visits and eight hours already worked... if someone needs me, if a patient is dying, or crying, or scared, or their family member needs a break... I just do it, as though there is always a little extra energy in the reserve. But when we go home, we crash... and that is when we let down the people we love, who were looking forward to us walking through the door, or showing up for a special event, or just being present for them.

Caregivers are the unsung heroes; their work is not as recognized as it should be. I have watched caregivers bathe, dress, feed, assist to the bathroom or to their favorite chair, and attend to whatever is needed without hesitation. I have watched them read and sing to their patients, listen to them intently and with interest, even if words have been repeated over and over again. I have witnessed them be kicked, pinched, and yelled at, even accused of things they never did. They are patient, gentle, and compassionate and give so generously of their time to people who need it the most and they do it well.

Like in any occupation there are caregivers who might appear to be lazy or take advantage or do not do their jobs as well as I think they should, some who are not AS compassionate as I wish they could be. But I have witnessed that with nurses too. Perhaps it is because they are just incredibly tired, and over worked.

For the most part, the caregivers I have had the honor to work alongside provide incredible care, work very hard, and go above and beyond, always putting their patients’ needs above their own. It is a very difficult job.

Caregivers deserve more credit, more money, and a standing ovation!

xo

Gabby